It’s been a busy week since we got the unfortunate news from CHOP. I finished up my internship (though I’m continuing remotely as time allows) and did all my last-minute shopping for school. My last weekend of summer included a morning at SkyZone (absolutely exhausting!) and a white water rafting trip complete with cliff jumping. At Drexel, my friends, my new roommates, and my academic advisors have all been great so far and I know that coming back was the right thing to do. It’s been a bit of a distraction from all the medical uncertainty that is plaguing my head. I’ve connected with a few other families who had a similar experiences and it’s been interesting to see what they have to say. My doctors have all been talking and figuring out what trials I might qualify for. A year ago today, I received my modified cells and today my parents met with the team at Hopkins (I called in) to see what they’d recommend next. Their recommended plan is to do a CART trial that attacks the CD22 antigen, and get a second bone marrow transplant as soon as I get into remission. They would potentially do a reduced-intensity prep regimen so that it wouldn’t be quite as toxic, and they actually could use my sister as my donor again. We weren’t expecting this because her bone marrow didn’t give me enough Graft vs Host disease last time to get all the leukemia, but apparently if they use stem cells instead of bone marrow and don’t clean them as well, I would get more of a reaction. There are, of course, lots of potential short and long term side effects of GVHD which as just as terrifying now as they were last time, but the doctors think this is the best curative option. Some of the other trials would probably put me into remission, but they don’t think it would last and the more times my leukemia mutates or returns, the fewer options we have. I don’t like the idea of a transplant and another 6+ months in isolation and I don’t like the numbers, but I am healthier going into it than most second-transplant patients which they say is an advantage. We are going to talk to CHOP as well and see if they have anything different to say. After I shared my diagnosis, I got a ton of support – way more than I ever imagined. Thank you all for keeping me smiling, no matter how easy it would be to cry instead. I’ve gotten some great quotes and inspirational messages which I’ve reread on days like today. My reaction to one post last week stuck out in particular – my friend Amanda posted a picture of us at the beach this summer. My first thought was “wow, I’m glad I had such a great summer before all this!” I’m more thankful than ever for everyone who made this summer unforgettable. I’m thankful I could go camping, tubing, to the beach and Colorado. I’m thankful Governor Hogan invited me and a few other kids from Cool Kids Campaign to go to the Redskins opening game, which was my first NFL game. I’m thankful I got the chance to return to Drexel and to visit my friends at UVA and College Park, and have that little taste of a normal college experience. I’m thankful my cells worked for a year, giving me the opportunity to regain my strength and have all of these memorable experiences. These are the things I need to focus on as we move forward and look for answers instead of asking why me. I’ve really been enjoying Timehop recently because it brings up motivational quotes that I’ve shared or saved over the years. Four years ago, I shared the video for Martina McBride’s song “I’m Gonna Love You Through It” which includes a clip of a woman saying “You know people love you in your life, but you don’t know how much until you get sick.” That is absolutely true, and if love could cure cancer there’s no way I’d ever have to deal with it again. Thanks for your thoughts, prayers, and inspiration – I love you all.
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A year ago this month I received my cancer-hunting CART cells and what a difference that year has made! Last September, my blood was full of leukemia cells and I had a port in my chest. I couldn’t walk up a flight of stairs without support. I couldn’t straighten my knees. I was more than ten pounds below a healthy weight.
Most of these things are no longer issues. I’m back to a healthy weight, port-free, my legs are straight and stairs are no problem. Even hiking in Colorado last month went well, especially once I was used to the change in altitude. However, after almost a year of being cancer-free, I got the absolutely devastating news that I once again have leukemia in my bone marrow. It’s a tiny percentage, and it hasn’t made it out to my blood yet but like they told me last June when I relapsed, it’s like a baby – it’ll just keep growing. I started to write this post before my appointment so that I could post it faster when I got the clear results I was expecting, but then I stopped myself. What if I jinx myself? When I got the news, I immediately thought “I shouldn’t have started that blog update,” as if typing a paragraph really affected my bone marrow. I wondered what negative things I’ve thought, said, or done that karma might be getting me for. Of course that’s a bit ridiculous, but it doesn’t seem like it when you’re in shock. So what really happened? My CART cells were engineered to target the CD19 antigen, which was expressed on my leukemia cells. In some patients, the CART cells stop multiplying and eventually die off, but that was not the case for me. They’re still alive and well. Unfortunately, my leukemia was tricky and stopped expressing the CD19 antigen so the CART cells can’t find it. I am the first patient on the study to relapse more than 9 months out from treatment, so even though I knew it was still a possibility I wasn’t expecting it at all. Moving forward, there’s another CART study that targets the CD22 antigen, which is also expressed on my leukemia cells. There are also a few other options, at least one of which also involves targeting the CD22 antigen. My sister has generously offered her bone marrow again, though if I were to get another transplant I don’t think she would be my donor because she was too good of a match last time. We aren’t sure what the path is yet, but I will keep you updated. As far as Drexel is concerned, I’ll still be going back fall term. I’ve been so excited to go back and finally have a healthy year – I don’t think the reality has set in yet. Classes start Monday and no medical decisions can be made that fast. Realistically, it’ll probably be almost a month until any real decisions are finalized and I can’t sit around at home for that long. I’ll lose my mind if I don’t stay busy, and many of my treatment options are at CHOP anyway. I may not take all the classes I had planned, but I’ll see how it goes. I still feel great and I’ll be staying as busy as possible to keep my mind off how much this absolutely, positively sucks. I’m shocked, I’m sad, I’m angry (and I already took my Dammit Doll to school – ugh!). Why me? Why now? How much can my body take? I don’t have any answers, but I know that I can beat this. There is no other option. |
AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
April 2022
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